Hi,
A new friend of mine recently told me she had Lupus. We write to one another often and it took her a while to share that with me. It is very important to me that I am sensitive to this and I would like to receive any suggestions as to the ways that I might be supportive in our letter-writing. I've started by researching her diagnoses but I'm aware that it's about real people with real feelings in the end and I want to be right on the money with my support. She has had an active life..she's in her 30's..I guess I'm looking for a woman's perspective if that makes sense.
Thanks,
Joel

05-14-2004, 06:59 AM

Saysusie

Hi Joel;
First of all, the fact that you care enough to want to be sensitive, to want to learn about the disease and to want to be a friend will mean so much to her.
As a woman, I walked a fine line of wanting people to understand that my symptoms were very real, but not to treat me like an invalid. Since that is so difficult for even us, as Lupus patients, to achieve..it is even more difficult for those who care about us to accomplish.
I appreciated when my friends would say simple things like, "Let us know when you've had enough, or want to stop, or are getting tired", and then we'd proceed with our fun as always. I knew that they were watching me for signs of fatigue, but they always waited for me to say "Enough". My closest and dearest friends were the only ones who would venture far enough to say to me "Get out of the sun" or "Sit your Butt down!" :lol:
I guess what I'm saying is that...what we need is for the people around us to take our fatigue seriously, understand our need to rest, understand our need to change our diets, to protect ourselves from the sun and to know that our mood swings do not mean that we are being bitchy, it is our disease! I know that is a tall order, but you sound as if you are up to it.
I wish you and your friend the best of luck...You are to be commended for your caring!
Stay in touch, we are always here
Peace and Blessings
Saysusie